April 26, 2018

expert reaction to the latest on Alfie Evans

Scientists comment on the ongoing Alfie Evans case.

Prof Dominic Wilkinson is Consultant Neonatologist at the John Radcliffe Hospital and Director of Medical Ethics at the Oxford Uehiro Centre for Practical Ethics at the University of Oxford. He has put together some new answers to the following questions:

Alfie is still breathing. Does that mean his diagnosis is wrong?

“Alfie has a severe neurodegenerative disorder. The exact cause isn’t known, however, all the doctors who have examined him (including those from overseas) have agreed that his illness is untreatable, and that, very sadly, he is in the end stage of his illness.

“His illness is a form of dementia, cruelly striking down a very young child, and leading to his progressive deterioration. However, just like older patients with severe end-stage dementia, he is able to breathe. The fact that he is breathing doesn’t change his diagnosis. Nor, sadly, does it change his outlook.

Alfie is receiving palliative care. What does that mean?

“Palliative care is a specialised form of medical care provided to patients, children or adults, who have illnesses that cannot be cured. There are three elements to good palliative care. It involves stopping medical treatments that can’t help and may be doing more harm than good. It involves giving medicines and other treatments, if needed, to ensure that the patient is comfortable. And, it involves supporting the patient and their family to make the most of the time that they have remaining together.

Alfie isn’t on a ventilator any more. Why can’t he go home?

“One of the good reasons to stop treatments like a ventilator in patients who are dying, is that this sometimes allows them to leave the hospital. For children who are dying, it can be possible to support them and their family so that they can go home. That may need specialised medical equipment and the support of dedicated community nursing teams and can take time to arrange. Alternatively, children’s hospices are able to provide an environment where families and children can spend time together, in a place that isn’t a hospital, but has specialised doctors and nurses on hand if needed.

“In Alfie’s case, there have been discussions between the doctors and his parents about whether it would be safe for him to go home. One of the very sad features of this case is the way that the relationship between this family and the medical team has broken down. That may make it difficult for them to reach agreement about the next steps for Alfie. If they cannot reach agreement about Alfie going home, the best option for Alfie may be for him to move to a hospice.

Why do the doctors want Alfie to die?

“Some commentators have suggested that doctors are killing Alfie, or want him to die. Nothing could be further from the truth. The health professionals caring for Alfie have dedicated their lives to the medical care of very sick children. They would dearly love to be able to save all of the children who they care for. However, very sadly, some children have illnesses that medicine cannot cure, they have deteriorated and cannot improve. In that situation, doctors and nurses change their focus to providing the very best palliative care for the child. Palliative care is not about ending life. It is about providing supportive, compassionate, dedicated care to children and adults at the end of their life.”

Dr Daniel Sokol, medical ethicist and barrister, said:

“As the legal routes are blocked time and time again, the tactics of some sections of Alfie’s Army are those of guerrilla warfare: threats, insults, and intimidation. The clinicians, the NHS, the government and the judiciary are painted as the vile and heartless enemy. Facts and motives are twisted to suit the aim, which is to put unbearable pressure on the hospital and its clinicians, until they crack.

“It is ugly and distressing for the many victims of these tactics, but it has kept Alfie Evans in the front pages and captured the attention and support of high profile figures and governments. There is a real risk that these guerrilla tactics will become the norm in ‘best interest’ cases involving children, which would be disastrous.”

Dr Amel Alghrani, Barrister (non–practising) and Associate Dean, School of Law & Social Justice, University of Liverpool, has put together the following Q&A on the legal issues surrounding the case:

Background/ how did this legal dispute begin?

“Alder Hey Hospital sought a judicial declaration that after 16 months in hospital, continued ventilatory support was no longer in Alfie Evans’s best interests and that he should receive palliative care only. The case arose under the jurisdiction of the Family Court to make a decision on behalf of a child, as his parents and the healthcare professionals could not reach an agreement. Although the court is not bound to follow the clinical assessment of the doctors, its assessment of the child’s best interests must be based on all the medical evidence available.

“In February 2018, the High Court concluded that it was an indisputable fact that Alfie’s brain has been devastated by progressive degeneration. The court heard evidence that the MRI scans, as interpreted, were compelling and that the thalami, which regulate the pathways of the brain, have entirely disappeared. This, controls the stimuli to the most basic sensory functions. Alfie has lost the capacity to hear, see, smell or respond to touch, other than reflexively, and his brain was entirely beyond recovery.

“The case has progressed (unsuccessfully) through various stages of appeal.

Why was he initially admitted to Hospital?

“Alfie Evans was born on 9 May 2016. By six months of age there was no doubt that Alfie was showing marked signs of significant developmental delay. On 14 December 2016 Alfie was admitted to Alder Hey Accident and Emergency Department with a history of coughing, high temperature and a reported episode of rhythmic jerking of all four limbs and his jaw. On the 19 December Alfie was reviewed by Dr R, a consultant in paediatric neurology and on examination was found to have a slow breathing rate, apnoeas (pauses in breathing) and his most significant identifiable neurological response was to pain. Alfie was transferred to the Paediatric Intensive Care Unit (PICU).

“Professor Judith Cross (the Prince of Wales’ Chair of Childhood Epilepsy at UCL – Great Ormond Street Institute of Child Health and also Honorary Consultant in Paediatric Neurology) reviewed Alfie at the PICU on 15 June 2017. Professor Cross concluded that Alfie has a progressive, ultimately fatal neurodegenerative condition, most likely a mitochondrial disorder and that “even if it were possible to stop Alfie’s seizures, which did not look likely given his poor response to anti-convulsant treatment to date, his brain is entirely beyond recovery.”

Why has the courts got involved at all, why can’t the parents decide?

“By reason of his age and his condition, Alfie lacks capacity to consent to or refuse medical treatment. A child’s parents, having parental responsibility, have the power to give consent for their child to undergo treatment; but overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests. This principle has been enunciated in many cases over the years, including by Ward LJ in Re A (children) (conjoined twins: surgical separation) (2000) 57 BMLR 1, [2001] Fam 147 and more recently in Great Ormond Street Hospital for Children NHS Foundation Trust v Yates and others – 157 BMLR 1.

How does the law resolve / govern disputes that arise between parents and treating healthcare professionals?

“In English law, any decision made with regard to a child’s upbringing, the child’s welfare shall be the court’s paramount consideration (Children Act 1989). Where there is a dispute between the healthcare professionals and parents regarding treatment for a child such as Alfie, who lacks capacity, this is governed by whether treatment is in their “best interests” – this is the paramount principle in such cases.

“Similarly, in the Charlie Gard case, McFarlane LJ elaborated on the paramountcy principle in medical cases. The consideration of an individual child’s best interests “must apply even to cases where parents, for the best of motives, hold on to some alternative view” (Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410)

How are best interests defined/determined by the court?

“In Re Wyatt (a child) (medical treatment: continuation of order) [2005] EWCA Civ 1181, (2005) 86 BMLR 173, [2005] 1 WLR 3995, the Court of Appeal set out what is referred to as the ‘intellectual milestones’ for judges making a decision of this kind. The Court of Appeal said (at [87]):

‘In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child’s best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient … There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable … The term “best interests” encompasses medical, emotional, and all other welfare issues

‘The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.’

“In Alfie’s case, the High Court judge concluded that the continued provision of ventilation, in circumstances, which he was persuaded, were futile, compromises Alfie’s future dignity and fails to respect his autonomy. The judge was satisfied that continued ventilatory support is no longer in Alfie’s best interest. Rather that Alfie’s need was for good quality palliative care to keep him as comfortable as possible at the last stage of his life. Mr Justice Hayden stated “He requires peace, quiet and privacy in order that he may conclude his life, as he has lived it, with dignity.”

How can the courts say life-sustaining treatment must be withdrawn when there is no diagnosis for his condition?

“In this case, the High Court determined that the medical consensus pointed compellingly towards the futility of treatment and thus this was no longer in his best interests to receive.

“Para 19. It is recognised that all the doctors have come to the conclusion that Alfie is suffering from a neurodegenerative disorder. Nobody knows what triggered or caused this devastating erosion of Alfie’s brain, there is no diagnosis and there may never be. The fact remains however that all agreed the degeneration is both catastrophic and untreatable.”

Does Alfie Evans have a ‘right to life’?

“The right to life under Article 2 of the European Convention of Human Rights imposes a positive obligation to provide life sustaining treatment, but that obligation does not extend to providing such treatment if that treatment would be futile and where medical opinion is of the view that the treatment would not be in the best interests of the patient (see R (Burke) v The General Medical Council [2005] EWCA 1003; Kings College NHS Foundation Trust v Hasstrup (Withdrawal of Treatment) [2018] EWHC 127.

Why can the parents not remove him from Alder Hey Hospital to take him to Italy – legally, is this not a deprivation of Alfie’s liberty?

“Legally it is inaccurate to claim Alfie is being deprived of his liberty by not being allowed to go abroad. His parents argued unsuccessfully that detaining Alfie constituted a violation of Article 5 of the European Convention on Human Rights, which provides that everyone has the right to liberty and security of person. The Supreme Court ruled that a person who is unable to move because of the measures being taken in intensive care to keep him alive is not being deprived of his liberty within the meaning of Article 5.

Now treatment at Alder Hey has been stopped, why would the court not allow Alfie’s parents take him abroad to Italy?

“The courts have conclusively determined that the continued ventilation is not in Alfie’s best interests: Judge Hayden stating: “Alfie’s need now is for good palliative care”. The court analysed the plans to take him to Italy against his needs and concluded it was not in his best interests to travel abroad, since “it is palliation, not treatment that is all that can now be offered”.

Is it murder to withdraw life-sustaining treatment?

“It is not murder to withhold medical treatment that a court has declared it is not in the patient’s best interests to receive. Any treatment, which the doctors do decide to give, must be lawful. As Lord Browne-Wilkinson put it in Airedale NHS Trust v Bland[1993] AC 789, which concerned the withdrawal of artificial hydration and nutrition from a Anthony Bland who was in a persistent vegetative state, the correct answer to the present case depends upon the extent of the right to continue lawfully to invade the bodily integrity of Anthony Bland without his consent. If, in the circumstances, they have no right to continue artificial feeding, they cannot be in breach of any duty by ceasing to provide such feeding’. Generally, it is the patient’s consent which makes invasive medical treatment lawful.”

“In Bland, Lord Goff, with whose judgment Lord Keith and Lord Lowry expressly agreed, pointed out that the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment.”

“In the present case of Alfie, the courts have ruled that in light of the unanimous medical evidence, it is lawful to withhold life-sustaining treatment.”

“Sadly, there is a significant lack of public understanding as to how the courts actually manage health and welfare cases involving people who lack capacity, including children. The UK has one of the most developed protective jurisprudence in the world, helped by the codification of past case law in the Mental Capacity Act 2005. The British legal system takes the best interests of those who lack capacity to make their own decisions about medical treatment as paramount.

“In both the Charlie Gard case of last year and that of Alfie Evans, a large number of experts have provided both written and oral evidence to the court – both from the hospital and independent of it – often at very short notice, and regardless of busy workloads. I have been involved in many such cases, and there is a very thorough system in place by which what is in the best interests of the vulnerable person or the child will be considered in depth and tested by cross-examination. In both the Alfie Evans’ case and that of Charlie Gard, experts of world renown have provided evidence. The children have had their conditions considered by a plethora of superb clinicians and experts with the highest possible credentials. Ultimately, the court is the final arbiter, but any decision made must be on the basis of all the evidence before it in the widest sense; not just medical evidence, but also psychological and social – which includes, of course, the important evidence of the family.

“Unfortunately, however, there is nothing any doctor can do for Alfie. He has a rapidly progressive, destructive brain disease and has been in a coma for the majority of his short life. On careful assessment by a paediatric neurology consultant, he showed no response to tactile, visual, auditory or sensory stimulation. The experts are unanimous that the degeneration of his brain is catastrophic and untreatable. The fact that very recently Alfie has survived longer off ventilation than expected does not change the fact that his condition is untreatable, his quality of life is extremely poor, and that according to the Consultant respiratory paediatrician involved in his case, any of his negligible responses to movement, light or sound are either due to basic reflex, seizures, or discomfort.

“Due to concerns that Alfie may be caused further suffering by being removed to Rome for alternative palliative care (not treatment for his condition itself), he cannot be discharged home to spend final precious moments with his family in the absence of the intrusion and possible pain of intensive care. The court has not denied Alfie life-saving treatment at the Vatican hospital; all the clinicians involved in his case are unanimous that there is no treatment to help him. Further, his continued stay in hospital has been misunderstood by some members of the public and misrepresented by some aspects of the media as unlawful detention, which is entirely wrong. There is a clear legal basis for keeping Alfie in hospital.

“Until a few years ago, the convention (and practice guidance on such applications) was that the Court of Protection would sit ‘in camera’, i.e., the proceedings would be in private. The media would not be permitted to publish the name of the vulnerable child or adult, and doctors’ names would be anonymised to avoid the identification of the person lacking capacity. As a result of some misreporting and the clash between the Court’s practice and concepts of openness and fairness, the practice was altered. Now such cases are heard in public, but staff are bound by confidentiality and thus often the picture painted in the media risks being one-sided.

“Unfortunately there have been some appalling instances of misrepresentation in Court of Protection cases. In both the Charlie Gard case and that of Alfie Evans, hard-working staff doing very difficult jobs have been demonised, verbally abused and threatened. The alleged encouragement of a private law prosecution for murder against such staff by a case worker at the Christian Legal Centre which has been assisting the family is astonishing, and represents a profound misunderstanding of both the law and the legal processes at work.

“Unfortunately, persistent unmeritorious litigation and understandable but ill-informed emotional reactions from some members of the public who do not seem to have read the clear and measured judgments only serve to keep family wounds raw. Taking things public is testament to the determination of families to fight to the end for their beloved children and to have no regrets. However, the toll which fighting such tragic legal battles takes on families such as the Gards and Evans’ cannot be underestimated.”

Prof Jonathan Montgomery, Professor of Health Care Law at University College London, said:

“I am dismayed that the protestors and the threats to prosecute doctors at Alder Hey are distracting from the attempts of the parents, health professionals and the judges to focus on what is best for Alfie Evans.

“English law makes the best interests of the child the primary issue before the court. All the evidence needs to be tested. The parents have been able to explain their views, bring all the evidence before the judge and challenge the thinking of hospital staff who saw things differently, and this is the right and proper procedure. The solemn responsibility of the judges is to cut through the clamour, assess the evidence objectively and determine what is best for Alfie, which they have done with integrity and compassion. But it is time to give the family privacy.

“There can be no doubt that Alfie’s highly experienced medical team have done everything in their power to give him the best chance at life. They have been supporting his life for over a year. There can be no doubt either that Alfie’s parents are devoted to him. The fact that this has led them to a different conclusion shows how difficult the case is.

“It is very worrying when we see misinformation that he could be given a better chance of life elsewhere, or that he could be cured. The parents and hospital staff need good evidence to make decisions about what is best for Alfie. They must also be alert to the possibility that they might interpret things wrongly, which is why we use courts to review the decisions in these tragic cases. It focuses the attention on what the evidence actually shows and allows the interpretation to be properly tested. That robust scrutiny means we can be assured that we have met our obligations to Alfie. It also means that we owe it to Alfie to have the courage to do what is right for him now that the best course has been determined.”

Dr Amel Alghrani:“The information below comes from material in the public domain. I have had no direct involvement in this case or the proceedings leading up to it.”

Dr Laura Davidson: Dr Laura Davidson is a Court of Protection Barrister who acts in applications for declarations of incapacity and best interests, particularly welfare decisions and deprivation of liberty. She is also a co-founder of Mental Health Research UK and an international development consultant on healthcare law.